Day 27

After a terrible night last night (I sat with her til 2:30am trying to get her to go to sleep... she was really grumpy... still convinced it's her tummy), she had fed at just after midnight, and then only woke after 7:30am to feed again. Infact, her feeding hasn't been great today- she drinks, but is very cross when she feeds.

I went out at lunch time to fetch the boys, and left Mikayla finishing her bottle with the lovely lady helping out with us at the moment, while we try find someone to work for us full time for a 3 month contract, while my lady is on maternity leave. Anyway, she called me about 10 minutes after I left, to tell me that Miks had stopped breathing. She had managed to get her breathing again... but shame, I think she got a bit of a fright. I had warned her these could happen though, and had told her what to do, and I must say, she seemed to handle it very well. I have a feeling it wasn't a proper apnea though, as from time to time Miks stops breathing for short periods (8-10 seconds) anyway. The paed just refers to this as interrupted breathing (I think). Still, if you aren't used to it, it can be quite alarming being on the receiving end of one of these.

The paed called today, having spoken to the only geneticist who lives in Durban, who is now retired. She was hoping I could maybe go and chat with him, in the hope that I would get more answers. His health is declining though, so I won't get to chat with him. She did say, though, that she had an informal chat with him, and he said that in his many years of experience, and having worked in the USA, and having seen countless cases of T18 babies over the years, that the oldest he has seen a T18 child survive is to prepubescent years, and that the children who do make it there are severely mentally and physically impaired. Some have managed a small amount of mobility, most are unable to speak, but they cannot function like a normal able bodied (and able-minded) person can.

Do I want that for Mikayla? Would any parent want that for their child? Added to the emotional toll it will take on us as a family, there are the financial implications, the time implications. As it is, Mikayla (being a tiny baby), takes up the most part of my day with feeding, burping, getting her to sleep. The reality is, that unlike healthy children, a mentally and physically impaired child requires the same (practically) amount of time that a newborn does. It would mean giving up my job, possibly, or hiring someone else to look after Mikayla. How would that effect the possibility of us having more children? And that burden will ultimately fall on my shoulders. And as selfish and as cruel as it sounds, I don't want that ENORMOUS responsibility- nor do I want to palm my child off into someone else's care. What does that say about me as a mother? As a person? Well, I think it says that I love my child, and I want her to LIVE... I am not talking BREATHING here... I am talking LIVING.

And you may not like what I am saying... but, as someone said to me today: don't criticize until you've walked a mile in my shoes!